Some help for Captain Ahab

[mrproblemface]

This entire year I have been plagued with odd symptoms that continued to recur without explanation. In brief, I was convinced by some bad information and poor guidance by a doctor earlier in the year that I might have put myself in contact with HIV through kissing(crazy I know), and sent the entire year testing repeatedly while putting myself through some of the most intense emotional stress I have ever faced. Really though, it all began with a chronic cough and a strange feeling in my soft palate that had me going for a while. A few months into the panic and testing, my noticed that my tongue suddenly presented with benign migratory glossitis(diagnosed by an ENT and Oral Surgeon), aka geographic tongue. This drove me nuts thinking I had thrush and further convinced me of HIV. The cough persisted and I started to get an on/off sore throat along with some aches in my neck. After testing negative roughly a dozen times, I went to a hospital at around 7 months after that kissing incident and actually tested reactive on their screening test, a new combo test that was apparently put into service last year and this thing is super sensitive. This was confirmed negative by Western Blot and I had to repeat it once more two weeks later, same results, screening test positive and Western Blot negative(both times they ran a p24 and that was negative as well). I went to another hospital two weeks later and took their combo test and it was negative along with a negative oral test. That doctor said don't worry, there's no way I have HIV. Sure! Well, what can I say? I had to choose between a mental breakdown or just move on with life so I chose to get on with things and put this madness behind me.

A week or so later I woke up and my entire neck was aching, particularly the base of my skull and the place where my neck meets my shoulders. The pain subsided a little but is still there and sore around the sides of my neck, and my joints have started to feel a bit painful as well. I want this to be over badly, but I don't think it will until I find out the source. I researched this the entire year and there are few things that can set off an HIV test, and one of those few things are autoimmune diseases!! At one point, while receiving another negative test from another HIV testing center, the doctor mentioned that I should explore the possibility that I might have an autoimmune disease because of my geographic tongue. I dug harder and found references to autoimmune thyroid issues with geographic tongue being one of the symptoms. That also happened to include aches and pains throughout the body and fatigue(I have a serious fatigue issue), and excessive sweating.

Does this sound familiar to anyone here? Has anyone else ever been led in circles by symptoms only to discover an autoimmune issue was to blame? Who do I see to diagnose this?(also, please don't suggest any more HIV tests, I've had about 15+ tests now and I'm done with that, if it turns out I have HIV you'll see it on TV as the rarest case in that diseases history)

[geena335]

is it too much of a coincidence?I too have fibro and geog. tongue plus osteoarthritis.I suspect some autoimmune disorder but no one has had it pinpointed yet  .Drs. seem to dismiss these  symptoms and I`m made to feel hysterical.Incidentally I suffer from glaucoma aswell. All these symptoms have come up over the last 4 years during an extremely stressful stage in my life.

[Red_Star]

There are approx 80 autoimmune diseases and more that are suspected autoimmune diseases.  What is listed to help diagnose an autoimmune disease include:

Antinuclear antibody tests
Autoantibody tests
CBC
C-reactive protein (CRP)
Erythrocyte sedimentation rate (ESR)

[mrproblemface]

Thank you so much for this, all of this information is very very helpful. I scheduled a full health screening and the doctor is basically going to go through a checklist of everything to see what might be the source. Do you know what kind of tests are usually ordered to diagnose autoimmune conditions?

[Red_Star]

Yes, i had excessive sweating and extreme fatigue (two of my numerous symptoms) due to autoimmune pernicious anaemia; confirmed with positive parietal cell and instrinsic antibodies. Interesting to note that parietal cell antibody can cause a false positive HIV antibody test result. (i'll send you the list of false positive HIV causes).  That said, this condition is extremely rare at 100 per million under age 40. But i have read that a vitamin B12 deficiency is a cause of unexplained cough.

"The current study looked at 40 patients with chronic unexplained cough. Of these, 25 were found to have vitamin B12 deficiency (serum levels <300 pg/mL); the control group consisted of 15 chronic-cough patients with no detected nutritional deficiency." - Medscape

Listed causes of geographic tongue include:

Sour or spicy foods
Genetics
Allergies
Stress
Vitamin B deficiency
Hormonal changes
Psoriasis
Zinc deficiency

Sweating when you eat is a condition called gustatory hyperhidrosis or gustatory sweating.

Physiologic reasons include:

Hot temperatures,
Hot foods and spicy foods

- Conditions that raise your body temperature enough to signal the sympathetic nervous system to turn down the heat.

Nonphysiologic reasons for gustatory sweating include:

Encephalitis
Syringomyelia
Diabetic neuropathies
Herpes zoster (shingles)
Parotitis
Parotid abscesses
Thoracic sympathectomy
Auriculotemporal or Frey's syndrome
Parkinson's disease
Nerve damage from surgery

- Conditions that cause the nervous system to have a communication breakdown.

Whether due to injury or disease, if a sweat nerve is mistaken for a salivary nerve, when the brain signals it's time to salivate, you will sweat instead. Just to add, syringomyelia is linked to another condition called Arnold Chiari Malformation. This condition is a noted cause of neck pain at the base of the skull. I'll send you some info on this too.